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Pele
Pele

the henna lady
Location: WNY, USA
Member Since: 15th Dec 2000
Total posts: 6193
Posted:I forgot to post this and Malcolm reminded me...
After all the crap that has happened recently, my insurance finally came through. I was working with an insurance agent who was really dilligent and after these few months and gads of paperwork, it finally went through...without a deductable! That's right, out of the $200,000 in medical bills I have to pay...not one red cent!
Yeah! And to those who donated money to my medical cause, I have used it to help get somewhat back on my feet and I really appreciate it, but if, since this happened, you wish for a refund, please let me know, I understand.
Thank you all again, I have really appreciated the support!

Also, for those of you who firebreathe... I have been asked to write something like a chronicle of my accident, what happened, how it felt, med treatments, etc. I have no clue where to begin or what to include so if you could please ask any questions to guide me in this, I would really appreciate it.
Also, FireMike, Dangerboy and any others who have suffered from this same illness, if you could answer the questions as well and email them to me, I would like to compile the information.
MikeGinny, if and when you have time, if you could possibly send me some technical-ish information that I can include (since you learned about this not that long ago), I am hoping this resource will help others avoid this happening, or give bumpkin doctors like mine a better idea of where to start when treating such incedents.
Thanks all!
Much love!


Pele
Higher, higher burning fire...making music like a choir
"Oooh look! A pub!" -exclaimed after recovering from a stupid fall
"And for the decadence of art, nothing beats a roaring fire." -TMK

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Rozi
100 characters max...
Location: Sydney, NSW, Australia
Member Since: 11th Jan 2002
Total posts: 2996
Posted:There is no way in this world that a refund is required. That money was a gift, to be used as you needed.

I am just glad to hear that the insurance came through



It was a day for screaming at inanimate objects.

What this calls for is a special mix of psychology and extreme violence...

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Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13920
Posted:Refund? You have got to be kidding, girl!

Happy news, though! Yippee!!!! Um...how about the custody thing? That work out OK, too? I've been thinking about you and hoping that worked out.

Pele, if you could give me the name and the address of the Attending Physician who cared for you during your stay in the hospital, I can write him a letter and encourage him to publish a case report in the literature.

I'll see what else I can do by talking to some of the pulmonologists here about how we might go about publishing some treatment guidelines for this condition.

What you had was almost certainly chemical pneumonitis, which is an immune response to foreign material in the lung. This can occur with almost any inhaled material, especially oily stuff like fuel or...well...oil. This can then lead to the so-called "Acute Respiratory Distress Syndrome" or ARDS. There is no good way to treat ARDS other than to keep the patient on a ventilator until s/he heals.

Also, it would be interesting to see if the course and outcome is better when different fuels are used.

Anyways, I think I can try to make the case that the fire arts are a growing trend in this country and that incidents like these will continue to occur with greater frequency. Thus, it might be of some benefit to devote some time and resources to figuring out how to best treat this, if the treatment is different from general inhalational pneumonia.

Who has asked you to write up your experiences?

[ 06. December 2002, 10:37: Message edited by: MikeGinny ]


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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Paddy
back from the dead...sort of
Location: 4341'N 7938'W
Member Since: 23rd Feb 2002
Total posts: 884
Posted:Yaaaaaaaaaaaaay Pele!

That's some good news to hear.

But of course it's nothing compared to the fact that *you* are okay.

Much love!


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Traveling Kyri
member

Member Since: 6th Dec 2002
Total posts: 28
Posted:great news lovely. best wishes.

Situations defined as real are real in their consequences.

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FireMikeZ
FireMikeZ

Laguna dude
Location: Laguna, California, US
Member Since: 24th Jul 2002
Total posts: 1438
Posted:yes, Pele, as MikeDoc wonders, who's asked you to write up your experiences? i for one have suggested such a direction in our PMs, but i am sure others have asked with other perspectives. so good to see you post on this important topic for so many in our community.

as y'all know, i can come up quickly with pretty meaningful projects. yet i'm totally totally open & eager for everyone's best ideas, and never tied to a lesser goal of fewer people yesterday. especially eager for your pooling of conceptual, managerial & creative talents, Pele & MikeGinny. i'm most proud of how new hybrid and broadened structures grow out of collaborations in which i participate, fulfilling more good goals & creating more opportunities in more directions.

so whaddaya think is the overall scope of what we're doing, & in what stages ya wanna build it?

what follows isn't complete or neatly organized yet, it's a first exploration with ya'll, not yet an outline itelf nor a response to one, as y'all are just approaching details so far here, right?

after you compile this material, and when my work is ready to meet you on it, what do you think so far of the "p-chem pneumo surivors corner & live contacts for new cases" proposal, either hosted at HoP or elsewhere? along with our case studies & presenting the medicine around it properly, the compilation you are suggesting now, Pele, these add up to a primarily "Fire Breathing Pneumonia Center."

the pieces don't have to be in one site online, they just have to interconnect easily. if HoP, and whomever will be the Pyro Pneumonia project manager in practice (assuming you, Pele, right now) would like to do it all, fantastic! if not, i believe strongly enough in offering other potential levels of contact and support for new cases, that i would be happy to manage that alongside what we all do at HoP. & in future, i always hope someone else will takeover things, i want effectiveness, i want to build, not to control! the levels i have only just begun to realize myself are:

(1) online basic reference material in one place. ultimately should be searchable in many ways.
(2) medical specialty sites, orgnanizations, doctors. ultimately should be resource for each new case's docs, if mine are correct that precedents currently hard to find in the US alone. clearinghouse for global physcian-to-physician consults? (which among them is a billing issue; have we a part in that? even for web expenses? do we care?)
(3) advice center, dynamic, articles core then answers to inquiries, which is just chatboard, right? coz advice starts with prevention & alternatives to petrochems, & options & techniques. then it's
(4) emergency advice: symptoms, counselling, friendship, direction, follow-up which often yields
(5) receipt of new case into case database
(6) could also have calls for lectures, etc., though not worried about that level of public service yet. MikeDoc has a swimmer's barrel chest, no doubt a good microphone voice, looks good in a white coat in front of worried parents & local physicians, nurses & caretakers intrigued by an exotic malady. the kids will love him anyway, he's a major pyro, right, & even fully grown? on the other hand, could produce audiotape including survivors in their own voices.
(7) could or could not be advocacy to other pyro groups, but not assuming such a level of sociopolitical activity now.
(8) surely much more, what inspirations come to you? these are just first possibilities which pop up.

sSince my current principal function is building the young, loose network of one region within one state, the vehicle which most shares my mission in this matter, outside HoP is SoCalFire. SoCalFire conceives has already begun to conceive of itself as part of a more general GlobalFire, which is also ready to host anything of international significance which HoP does not host....and please, everyone here! no hints of competitiveness in organizations any more than in individuals as Malcolm has highlighted for us recently. what i'm looking forward to is Malcolm's suggestion that cross-linking (at the very least!) of valuable things amnong the handful of sites around the world with significant, distinctive parts of the fire arts story would be all to the good. GlobalFire will soon certainly connect in many ways with the few notable global and regional pyro sites & live organizations which exist, in all productive ways. Always seeking to complement Home of Poi with what is not done at Home of Poi, or what is done with different content, so more good things are available to all our family. being non-commercial, the heart of these initiatives is service. period. so personally, i never have organizational or personal allegiance or priority conflicts. none. i support all, and hope i have already demonstrated that i hope to offer a stance of cooperation among pyro organizations when i find them feuding, so they can move out of them into collaboration.

will be great to create better sources for all fire arts players to benefit around the world.

my own case being milder than yours, my doctor felt that because a biopsy was not ultimately required along the way, he did not have enough to publish, at least on his own. i mentioned your encouragement that he might publish, as you wished, MikeDoc, and said you'd like his email if he was publishing. i can certainly ask if he'd participate in a survey if you put a professional medical one together.

i will be happy, personally, to answer what i can answer myself of your survey, MikeDoc, and have pretty good notes about much of my progress. i don't livejournal. however i'm usually clear about medicine, for a quick-study layperson, and always understand contexts & approaches. i kept a hand-copy of the few bedside chart items they followed on me. then my doctors relied on my reporting them much of my progress, especially after release. i also have CATs and XRays which...ahem...might be a bit overdue. hey, i shoulda asked your help earlier, Mike on that. i'm rather in poor funds. can you, in the interests of this research, get dupes made of them in your lab so we can collectively have a copy, including to publish in print/online format, besides the originals which must be returned to the hospital, though i believe they can be checked out again too?

ok, if we're all ready to start with Pele, 3 more HoP peeps to invite into our work:

2 who should be asked to take the survey are trintek, whose case is milder still, yet has interesting features because of his aggressive self-therapy, if he'll reveal those details, and raevon, whose liver has responded by devloping Gilbert's syndrome, apparently as a permanent condition.

3rd, Flynt has recently done a lot of research on p-chem pneumonia, tidbits of which she has shared with me. she's in between longer-term jobs and has only internet cafes for access right now, and may only have regular access after the New Year opens her Melbourne job market wider. she might afford filling out a questionnaire at cafe prices, however, and she does check her HoP PMs every few days, and her e-mail almost as often.

is Dangerboy enrolled as part of our project yet, Pele?

congrats on your insurance, Pele! (oh, so far so good with mine.) That's one huge relief, huh, Lynne! i'm really glad your spirit is coming across strong, sure, so perceptive, with such admirable self-possession these few days. that's my relief.

how do y'all want to proceed, Pele, MikeGinny?

with all my love,

~ Mikie

[ 06. December 2002, 15:53: Message edited by: FreMke ]


molten cheers,

~ FireMike

FireMikeZ@yahoo.com (personal messages welcome, no promo spam, please!)
Laguna, California, US

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Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13920
Posted:Pele, do you know if they did a lung biopsy on you?

1) I hope they didn't. It's really not necessary and it's risky.

2) I hope they did. It would be very informative.

(Damned ethics...they keep interfering with my curiosity! )


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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FireSpirit
FireSpirit

Classic 90's Fire Dancer... Poi, Staff, Doubles, and Breathing
Location: South Lake Tahoe
Member Since: 29th Mar 2001
Total posts: 743
Posted:WoW Girl!
I had no idea that you where sick, and going through so much at this time!
I send you nothing but Good Energy and Cosmic Light your way.
Your breathing student,
~Fire Spirit


FIRE IS ALIVE!
IT LIVES AND BREATHS!
IT CONSUMES, AND DISTROYS!
BUT WE CONTROL IT,
AND DANCE WITH FIRE!!

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Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13920
Posted:Well, Mikie, the problem is that I hate pulmonology. So I certainly have a better understanding of it than the average joe on the streets, yes, but I don't feel very comfortable lecturing on it. If it were neurology, that would be different.

What I can do is get in touch with some of the pulmonologists here at the University of Michigan. From the medical side, here are the eventual goals I think we should have.

First of all, I am going to name the condition "Firebreather's Lung." This is very irresponsible since I know nothing about the cases. But hey, I like to live dangeorusly.

The goals from the medical side:

1) Educate fire breathers on the dangers of what they do, how to recognize symptoms of pneumonitis, and (assuming we can figure this out) what the risks are of different fuels.

2) Educate ER docs and pulmonologists about the presentation and natural history of this condition.

3) Try to figure out how best to treat the condition.

4a) Serve as a nexus of information about case reports

OR

4b) Get the pulmonology community to recognize that something needs to be done about studying this condition and use their resources (their journals) to exchange that information.

Am I missing something?

BTW, you might think that a nice goal would be to get doctors to stop looking at fire performers like we're freaks. Sorry. Let's stick to goals we actually have a snowball's chance in hell of reaching.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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trintek
member
Location: San Antonio, TX
Member Since: 15th Sep 2002
Total posts: 107
Posted:aggressive self therapy? hell man, that sounds like a great description of my life

work up a survey, i'm game, i already posted some if not most of the info on totem, but, am always up for a recap... i must say, i am still getting over it, but, i am well enough (as i proved last night) to carry my weight again as a firebreather... three mouthfuls of fuel, then i told everyone i was going back to healing and didnt feel like doing anything else to aggravate it right now... gimme another week and i should be great..

as far as a mild case goes, i guess you could call mine mild, i'm still alive, and quite frankly am now a fan of chem pneu... best sleep i had in ages, and most wicked dreams... (ever seen a 6 legged dog chase you? no? neither have i, it kept tripping on the extra legs)

either pop up a survey, or, even a basic list if what you want to know, i'm happy to share the experience... just remember kids, dont try this at home, i'm a trained idiot


We bleed the same blood, We cry the same tears, We have the same fears, We pass the same years, We see the same stars, Under the same skies, We pass the same time, We all live and die

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Charles
Charles

Corporate Circus Arts Entertainer
Location: Auckland
Member Since: 27th Jun 2001
Total posts: 3989
Posted:MikeGinny - I don't think the average health professional will ever think of firebreathers as anything other than crazy freaks.

Over here in NZ, they see the art as a slow form of self mutilation and russian roulette.

To be honest, they aren't too far from the truth.

Pele and a few others, who go through a rigouress (spelling?) detox everynow and then are probably the only ones who aren't doing irreparable damage.

Fromt hei rpoint of view, if someone was "into" self-mutilation and tried to explain to me the reasons WHY they like it, I'd still think they were freaks too.

IN MY OPINION OF COURSE...


HoP Posting Guidelines
* Is it the Truth?
* Is it Fair to all concerned?
* Will it build Goodwill and Better Friendships?
* Will it be Beneficial to all concerned?

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Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13920
Posted:Charles,

1) Yeah, my point was that trying to get doctors to accept firebreathers as "not freaks" is...

Well, let's say that you could probably count the number of doctors in the U.S. who wouldn't think a firebreather is a complete freak on one hand. And when I become a doctor, you will still probably be able to count them on one hand.

2) Your liver and your kidneys remove toxins in your system. I would warn anyone against so-called "detoxification" schemes. At best, they do nothing other than to provide a false sense of security. At worst, they can involve chemicals and treatments that can throw off your electrolytes and wreak all sorts of havoc with your system. Be very careful about this sort of thing.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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Doc Lightning
Doc Lightning

HOP Mad Doctor
Location: San Francisco, CA, USA
Member Since: 28th May 2001
Total posts: 13920
Posted:I have information.

Rule #1) Never trust a doctor who tells you that you're the "first case ever."

I did a literature search and found many, many case reports of "Fire Eater's Lung" (an unfortuante misnomer, since it's fire BREATHING that causes the disorder, not eating) in many languages.

Ok, now I have a jumping-off point. After this next final, I'll get back to you on what else I can find. However, since most of the articles are not in English, I'm not sure how much information I'll be able to find.


-Mike )'(
Certified Mad Doctor and HoP High Priest of Nutella

"A buckuht 'n a hooze!" -Valura

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Pele
Pele

the henna lady
Location: WNY, USA
Member Since: 15th Dec 2000
Total posts: 6193
Posted:Mike, a bit of clarification, I was not told ever as in ever-in-history. I was told the first ever as in, in this area at that hospital.

So much to think about...I will review this and get back to you all soon. Life is sooooo busy during the holidays!

Thank you all for support and interest and work. I do think this is very worthwhile.

Oh, and Mikie, I was asked by John Voldel and a few others to write this up as well as having discussed it with you.

Love and safe wishes to all!


Pele
Higher, higher burning fire...making music like a choir
"Oooh look! A pub!" -exclaimed after recovering from a stupid fall
"And for the decadence of art, nothing beats a roaring fire." -TMK

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FireMikeZ
FireMikeZ

Laguna dude
Location: Laguna, California, US
Member Since: 24th Jul 2002
Total posts: 1438
Posted:happy holidays, Pele & all!

MikeDoc, k, most urgently, for the CAT & XRays i (& Pele prolly) can give ya right away, what about my query in my main early post above, can you get them duped in MI tout suite?

trin (*grin*) in "Firebreather's Lung," mild = hellish.

yours was mild = hell & some scourging for weeks yet for what, $200 or under $2,000, especially as you insisted on minimal prescriptions?

mine severe = triple hell with purgatory through many months when coming up out of it for $20,00+

Pele's harsh = nonuple hell with pursuing demons from kur through many seasons, and we hope not too many years, for $200,000+ & if she has cosmetic surgery, how much is the total then?

if we have later complications the budget swells.

good inhalations to all, and fresh fragrance with sweet kissing breath this season of wonder and firelight and uncommon joy with friends & family,

~ Mikie

[ 13. December 2002, 10:27: Message edited by: FreMke ]


molten cheers,

~ FireMike

FireMikeZ@yahoo.com (personal messages welcome, no promo spam, please!)
Laguna, California, US

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Rozi
100 characters max...
Location: Sydney, NSW, Australia
Member Since: 11th Jan 2002
Total posts: 2996
Posted:Lightning (using nickname so as to distinguish MikeGinny from FireMike) has a good point about trying to make the medical community a bit more aware. Yep, they prolly do think we are all weirdo freaky people without a braincell in our heads, whether we are a fire professional, or a teen playing with matches.

Recognition of this condition may increase peoples awareness, such that they can distinguish between the professional (and the serious amateur) and the teen. Because both need to be approached in an entirely different manner. The teen needs to be approached as someone who has no idea whatsoever of the dangers they are facing. The professional or serious amateur needs to be approached as someone who is probably well aware of the dangers, and has accepted them. Sure, there may be more they can learn about the dangers, but they are doing this in total awareness. And they need help to minimise the risks.


Non-Https Image Link


No more medical professionals saying "firebreathings bad, m'kay?"


Non-Https Image Link


It was a day for screaming at inanimate objects.

What this calls for is a special mix of psychology and extreme violence...

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trintek
member
Location: San Antonio, TX
Member Since: 15th Sep 2002
Total posts: 107
Posted:insisted? hell i basically wrote my own prescription *thanx the gods for veterinarians and full service aquarium shops*

total cost of treating mine was... lets see... mebbe 200 bux in lost wages, but, those are null as i probably wouldnt have finished the contracts either way... doc time was donated... so... erm... around 10 bux worth of tetracycline, 3 10 packs from fintique at 2.99 a pop 10 bux and loads of sleep.... you forget, mild for me means having to cut down on how much i smoke, stay in bed more often then normal, not practice blowing, and..... the worst part.... try to remember to down a damned pill every 8 hours

as far as rozi's comment goes.... dammit, i have catscans, mri's, and pet scans that prove i still have at least 3 functioning braincells.... they do however fight it out on occasion, so, may only be 1 left at this point

l8z and luv,
trin


We bleed the same blood, We cry the same tears, We have the same fears, We pass the same years, We see the same stars, Under the same skies, We pass the same time, We all live and die

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